Research Support & Monitoring

SB&H responds to requests to support research that will improve the quality of life for all individuals with spina bifida and/or hydrocephalus and their families. We work in partnership with hospitals, rehabilitation centres, universities and other research facilities by:

participating in focus groups,

distributing information about research projects through our newsletters,

including information about research projects on our websites,

endorsing research projects to possible research participants,

advocating for more government funding for research,

providing letters of support to other funders, or

offering financial support to small research projects.

Spina Bifida and Hydrocephalus Association of Ontario Research Priorities

SB&H chooses to play a role in facilitating research through a stronger presence in the research community and by influencing the creation of a research agenda (international and national) through increased collaboration with various stakeholders.

The following areas have been identified as important research priorities:

For each brain disorder population, the report describes sociodemographic characteristics, provides estimates of prevalence and incidence over time, and presents an overview of costs associated with one year of provincial health system use.

Chapter 12 focuses specifically on spina bifida.Kicking off the chapter are two great quotes to personalize the report and help remind those reading the report it isn’t just stats and figures but that the information represents peoples lives.

The National Population Health Study of Neurological Conditions

In 2009, the Government of Canada invested $15 million over four years to fund the first-ever National Population Health Study of Neurological Conditions.

The purpose of the study is to fill gaps in knowledge about neurological conditions and their impacts on individuals, their families, caregivers and health care systems.

The objectives of the study are to better understand the:

scope of neurological conditions in Canada (incidence, prevalence, and co-morbidities).

risk factors for the development and progression of neurological conditions.

use of health services, gaps in services, and recommended improvements.

impacts of neurological conditions now and projected over the next 20 years including economic cost.

The final report on the study is expected to be released in September 2014.

Research Featured in Current Magazine

MOMS Trial (Management of Myelomeningocele Study)

In-utero Spina Bifida Repair

Dr. James Drake provided an overview of an exciting breakthrough of the past year, the Management of Mylomenginocele (MOMS) trial, which was published in the New England Journal of Medicine in March 2011. The MOMS trial compared two approaches to the treatment of babies with spina bifida mylomenginocele: surgery on the baby in the womb at the gestational age of approximately 24 weeks with a second cesarian section at term ( or as close as possible to it); and the usual standard surgery for myelomeningocele after the baby is born. Read more...

MOMS Trial (Management of Myelomeningocele Study)

Maternal and Infant Outcomes

Dr. Gregory Ryan, a Maternal Fetal Specialist at Mount Sinai Hospital in Toronto talked about the significant health impacts and risks for both the mother and infant from having surgery for the management of mylomeningocele.

Although the surgery holds promise, further investigation is needed to examine ways to make the procedure easier and less invasive for both. Read more...

Self-Esteem and Social Support: Strengthening the Social Relationships of Young People with Spina Bifida ( Exerpt from Current Magazine )

"The purpose of this research is to illuminate the nature of social support experienced by young people with spina bifida. Participants in the individual interviews had average levels of self-worth and higher than average levels of parental support, based on questionnaires completed 3 years ago in a study by [Dr. Beverley Antle, R.S.W.]" Read more...

The SANDI Project: Unlocking the Mysteries of Spina Bifida and Hydrocephalus

by Dr. Maureen Dennis

"Children with spina bifida and hydrocephalus (SBH) have a distinctive pattern of cognitive ability that includes relatively good skills in using and understanding words, in rote memory; and in social awareness, but relatively poor skills in visual perception and eye-hand manipulation skills." Read more...

Decline in Spina Bifida: Real or Imagined ( Exerpt from Current Magazine )

"The Bloorview MacMillan Children's Centre has been collecting information on children with spina bifida in a database for the last 20 years.

"Children are referred to the Bloorview MacMillan Children's Centre at a young age and are followed to adulthood. The database tracks these referrals and documents other demographic information. Investigation of the database has revealed that there has been an ongoing decline in baby referrals for the last 10 years." Read more...

From the Medical Journals
Research from around the world

Hydrocephalus Clinical Research Network

The mission of the Hydrocephalus Clinical Research Network is to dramatically improve the lives of kids suffering from hydrocephalus by conducting important and field-changing, multi-center clinical research.

We are looking for healthy women who are either planning a pregnancy or who are less than 6 weeks pregnant, but are not currently taking folic acid or multivitamins. In addition, women must not have had a previous pregnancy affected by a neural tube defect or a family history of neural tube defects.

Motherisk will provide multivitamins containing folic acid to all participants upon study inclusion and until 30 weeks of gestation. These multivitamins are to be taken daily. They are approved by Health Canada and can be safely obtained from healthcare professionals and healthcare services.

Researchers at the Hospital for Sick Children will draw blood samples at 4 times during the study to measure folate levels. Folate measurements will take place at the Hospital for Sick Children (Toronto, Ontario); therefore, study participation may be most convenient for women residing in the GTA.

Participants will be paid $250 (maximum) upon completion of the study. Payments may be adjusted depending on the degree of participation.

If you would like to participate or if you would like more information, please contact the study co-ordinator, Carolyn Tam, at 416-813-7283 or by carolyn.tam@utoronto.ca

Participate in research into the quality of life of people with Normal Pressure Hydrocephalus

SB&H is proud to be supporting the research of Dr. Safraz Mohammed from St. Michael’s Hospital Division of Neurosurgery. He is working under the supervision of noted neurosurgeon, and adult hydrocephalus expert, Dr. Michael Cusimano. Dr. Mohammed and his research team are developing a comprehensive questionnaire to assess the quality of life of people with Normal Pressure Hydrocephalus (NPH). He is asking people with NPH to complete a survey to determine the best questions to include in the final questionnaire. We encourage you to complete the survey. The more who participate, the more reliable the questionnaire will be.

By completing this survey, you will be helping doctors understand the impact of hydrocephalus on a person’s life. They can use this information to tailor treatment to meet the specific needs of each person.

No identifying information will be collected. Your responses will be anonymous.

Before completing the survey online, we encourage you to read the research consent form. If you request a paper version of the survey, the consent form will be included.

Complete the Online Survey or contact SB&H at skean@sbhao.on.ca and we will send you the questionnaire on paper along with a postage-paid return envelope so you can return it at no cost to you.

First World Congress on Spina Bifida Research and Care

Participants from around the world attend this unique forum where leaders in the fields of neurosurgery, neurology, urology, developmental pediatrics, orthopedics, epidemiology and other arenas gather to discuss the future of care for those with spina bifida.

The SANDI Project is a collaborative effort between The Hospital for Sick Children in Toronto, the University of Texas - Health Science Center, Baylor College of Medicine, Hermann Hospital, Texas Children's Hospital and Shriners Children's Hospital. The project has two aims (1) to identify key outcomes (skills and abilities, academic and vocational achievement, behavioural and social adjustment) in children, adolescents, and adults with sb&h; (2) to relate differences in outcome to genetic patterns, medical history, brain development and social and educational environments.

The SANDI Project is looking for more participants. Those eligible are children and adults with spina bifida and hydrocephalus between 8-65 years.

Maureen Dennis, Ph.D. Senior Scientist and Co-Principal Investigator, SANDI Project presented an overview of recent research on spina bifida and hydrocephalus, September 30, 2006 at the SB&H Annual General Meeting.

The new studies of the genetic bases of spina bifida have identified populations who are at greater or lesser risk for neural tube defects. Studies also showed that the brain structure and behavioural function in individuals with spina bifida have identified characteristic features of brain development, as well delineating how the brain works successfully in performing tasks such as reading. The current research into adult outcomes has begun to identify particular challenges, such as memory, that face the young and middle-aged adults with spina bifida and hydrocephalus.

A copy of Dr. Dennis' presentation is available on CD-ROM through SB&H. If you would like a copy, please contact SB&H at 800-387-1575 or email us at provincial@sbhao.on.ca .